A few years ago, when I was 40 years old, I broke a tooth below the gumline and needed to have it extracted. My options were to wait a month and have the procedure done at my regular clinic, or go to an emergency clinic and have it done the same day. I chose the emergency clinic. I’m Autistic, so new environments can be very overwhelming for me. I brought a plush sloth and a Rubik’s Cube with me to help me manage my stress. The clinic was small and only saw one patient at a time, but there were still bright lights, strong smells, and unfamiliar people.
I’ve been treated very poorly by some dentists, so I’m always nervous about receiving care from a new one. This dentist was kind, but I felt like he talked to me like I was younger than I was. I don’t think most middle-aged dental patients bring toys along to their appointments, so I wonder if that affected his perception of me.
Since so much of my tooth was gone, the dentist had to push my gum tissue away from the remaining nub to expose enough of it that he could grasp it with his forceps. Before digging in, he gave me a dose of lidocaine. Unfortunately, it wasn’t enough to properly numb me, and the procedure was excruciatingly painful. I screamed and cried in pain.
The dentist apologized for causing uncomfortable pressure sensations and then asked if he could continue. I was actually responding to stabbing pain, not pressure, but I felt so overwhelmed that I was unable to correct his mistake or request more lidocaine. I agreed to keep going to the end, in agony the whole time.
After it was over, I felt like something weird had happened, but I didn’t know how to describe it.
I had felt like my pain didn’t count for some reason, and this had made me unable to express it through intentional means. At the same time, I was in so much pain that I couldn’t stop myself from screaming. I’m grateful that the dentist was patient about my screaming, but it would have been much better if he had properly assessed the situation and offered me some pain relief.
Prior to this experience, I hadn’t fully realized that it was possible for someone to misjudge my pain as catastrophically as that dentist did. As an Autistic person, I’ve been told throughout my life that many of my pain responses are the wrong intensity for the stimuli. I accepted this as truth for a long time. After seeing how wrong that dentist was about me, though, I started to look back at my life and wonder how many other times I had actually felt as much pain as I had expressed, despite others insisting that I couldn’t have.
Throughout my childhood and adolescence, I had many negative experiences with people’s responses to my expressions of pain and distress.
When I cried, my peers called me a crybaby, and adults called me dramatic. When my distress led me to elope or engage in self-injury, adults accused me of attention-seeking behavior. As I escalated my expressions of distress, the adults around me escalated their efforts to stop these expressions.
At age 14, I was sent to a residential behavior modification program, where I was assigned to a group with seven of my peers. The program emphasized accountability, so whenever we noticed someone else breaking the rules, we were expected to confront them about it. If someone broke the same rule repeatedly, we were to initiate a process in which the accused person was required to use a behavior model called the Reality Model to explain their behavior to the satisfaction of the rest of the group, plus one or two staff members.
To apply this behavior model, we had to start by acknowledging whatever behavior pattern we were being confronted about. Then we had to identify which of our needs we were trying to meet with that behavior. After that, we had to state a belief we held that had made us think our behavior was a good way to meet that need. Finally, we had to explain why this belief was wrong and suggest a better belief we could use to replace it.
While I was in that program, I was on a heavy cocktail of psychotropic medications that came with all sorts of side effects and interactions, including sedation, confusion, poor concentration, vision loss, psychomotor impairment, and more. However, the program’s principle of accountability didn’t allow me to include this information in my analysis of my behavior.
As a result, I was frequently required to produce explanations of how my flawed beliefs had made me think that I shouldn’t have to pay attention and do my reading and writing assignments like everyone else. When I mentioned my side effects or expressed disagreement with the applicability of the model, I was reprimanded for avoiding accountability. (I wrote more about my experiences with that program in my article, What My File Didn’t Say.)
This part of my past feels closely related to my more recent experience of struggling to communicate with my dentist. I think the reason that experience confused me so much is that I was trying to understand it through a similar framework to the one I’d been given at the behavior program decades prior.
That program trained me to explain my behavior using other people’s perceptions, not my own.
My pain was a crucial part of what happened during my dental procedure, but I struggled to see that as a real, meaningful part of the experience. I was evaluating the elements of the situation based on observability, not relevance or urgency, and my pain didn’t make the cut. The dentist couldn’t observe my pain. He noticed my distress behavior, but he attributed that to pressure sensations.
My experience with the dentist raised an important question that I was unable to answer within the observation-based framework that shaped my understanding of human interactions: What should happen if one person is in excruciating pain and no one else realizes it? I am curious how other people might answer this question using their own frameworks for explaining human behavior.
I have also considered how my behavior at the dentist’s office may have been documented in my chart, and how that could impact my future experiences. Did the dentist make a note that I screamed intensely at the feeling of pressure? If someone read a note like that in my chart, how might that person respond to me screaming in pain? What might it take for me to communicate an experience of treatable agony to someone who believes that my screams mean something else?
I don’t know if that dentist wrote any notes about my behavior in my chart, but I’ve encountered other serious misattributions of my distress behavior in my medical files. I am very concerned about how easy it is for harmful false assumptions to become official records. At the same time, I have mostly reliable speech, and I make my own medical decisions. This issue is much more dangerous for people who don’t have that kind of privilege.
I had another similar extraction procedure about a year after the excruciating one. I told the dentist (a different one this time) that I was nervous because I hadn’t received enough lidocaine for my last extraction, and it had been very painful. She offered to give me some more lidocaine, and I eagerly accepted. It was still a stressful and unpleasant experience. There were bright lights, strong smells, bad tastes, painful pokes, and overwhelming activity inside my mouth. But with appropriate pain management, I got through the procedure just fine.
During my painful dental extraction, I acted according to the behavioral expectations that were placed on me during my younger years. I followed instructions without asking questions. I answered the questions I was asked without adding extra information. I didn’t ask for anything that wasn’t offered to me. But to be effective as a middle-aged dental patient, I needed something entirely different: self-advocacy.
